We are alive!

Sorry it has been over a week since my last post. These past two weeks have been jammed packed and by the time I think of posting I am too exhausted to turn on my computer. Plus when it comes to posting or letting Payson sleep on my chest...Payson wins!

Payson has put on a whopping pound in a little over a week, so he now weighs in at 19l9 lbs.! Just when I think his cheeks can't get any bigger they plump up a little more! They are so pinchable that it takes everything in me to resist pinching them while he is sleeping! Such a cute baby!

This past week has been tiring...What's new, right? I think we just found our new "normal". Funny thing is we can't figure out if it is Payson or Margaret Ruth who is more tiring!!! If she isn't first she is a close second on the list! We are now in full throttle mode with Payson and his doctors appointments that take us out of the home 5 days a week, sometimes twice a day. The days that have two doctor's appointments are the most challenging, pain staking and tiring. It is one thing to have to organize your self to go out once, but have to organize, go out, come back revamp your supplies and emergency bag, orgainze again to go out is a whole other ball of wax! On thursday we had to go to 2 doctors appointments and then to dinner at my grandmothers despite surviving Todd and I were dead by the time the nurse came in at 11 pm. I have learned my lesson to try and do 3 in 1 so those days will only be out of desperation. As one can imagine those precious days where we don't have to go anywhere is a welcomed break!


Beside from Payson's appointments we have been dealing with nursing schedules, social security administration, medical insurance companies and medical supply companies. Our nursing has been top of the line and even though they are a small company they give thier all in the game! I am so happy to have them apart of our Payson team. Unfortunately, they have lost to of our nurses this past month due to circumstances beyond their control so that has left a lot of time open in our schedule, but they have always had someone cover it! Our poor African nurse has been here 23 days in a row pulling in doubles every Sunday. He is amazing and a joy to have around! Now I can't say the same for SSI. If I paid them I don't think they'd go away! I have boldly told them that I didn't want social security for Payson that I just wanted the medical assistance. In order to ensure we would get medical assistance for Payson we had to apply for both the assistance and SSI. Even though medical assistance has been in effect for four months social security is still making a decision. Yet, until they do they need us to show up will our ENTIRE family of 6 at 11 am on a friday morning, (never mind that their offices are the stop before hell, they share a space with the health department which is great for a trach/vent kid, the sign on the door tells all their patrons to leave their guns at the door and the restroom sign states to tell the nurse if you have an STD...hmmm don't think I am taking my worst enemy there) all our social security #'s, our orginal life insurance policies, mortgage documents, bills, etc. With this much to provide I am still pondering how people can fraud the government they are either brillent or have way too much time on their hands! *Update: we actually just heard we have been declined, but they will reopen the file every three months. Please don't! I can't complain about our health insurance b/c last week we recieved a manilla envelope with bills from Paysons hospital stay. There were at least 30-40 pages and all we owed was $30. Hurry up and pay that bill! Our medical supply company is well an adventure. I had to send them a scathing email a couple of days ago to just get my supplies that were needed. We get a monthly allottment, but the thing is they haven't told me the totals that my insurance allows. Thus they give me 4 of something, my insurance pays for 6 they never tell me the insurance will pay for 6 and I am begging for more than 4. Does that make since? Nope didn't think so! There was one instance I was begging for more of something. I had gotten a letter of medical nessecity and prescription. The medical supply company said their other clients didn't need it and the owners said we don't need it so we don't get it. The catcher was that the insurance company would pay for the additional. So in my discussion with the supply company I asked them if I had the required paperwork, my insurance pays for it then why can't I get it? They didn't have an answer and sent out my request in the mail the next day. You would think I was asking them to take from their stock without getting paid. Ridiculous! This is an ongoing battle with mostly everything I want/need. Finally, I have threatened them saying if they don't stop causing me aggrevation then I will switch companies. They are in the buisness of helping medically challenged families have their loved ones in their home instead of making it easier they have made it pure on hell. Another aggrevation that is not needed!

As far as Payson's accomplishments this week...It has been another good week. We have had a little more giggles which is always a delight. If I pretend I am a dog and sniff his neck he always laughs! It is great! He has taken a little cereal by mouth...not a lot and not measurable, but he is taking it a swallowing. WooHoo! Slowly, but surely is our motto here! He also sat up yesterday all by himself! Considering he is 6 months that really isn't a big deal, but given he is a hospital baby it is a huge deal! He is also gaining core strength quickly and is accomplishing his thearpist goals quickly. With feeding thearpy he has already reached 6 our of 12 of their goals! In Physical thearpy he has reached 3 of 16! That is in just two weeks! Imagine what the future holds for that boy!

His procedures on Monday went well. His esophgeal dialation went well and they were pleased with how far they could stretch it without causing any bleeding. They were also happy to see he is actually using his esphogus by swallowing thus allowing his esphogus to remain big. One of the surgeons told us that if he'd seen the x-ray before had he wouldn't have dialated. Right before we went into the OR we met an ENT we loved. He looked at Payson's stoma, which looked great and even scoped him. The surgeons said that his airway had a significant collapse that will be a long time before they can take out the trach, but the ENT just said he had a collapse, but nothing more. So, when we see our puliminologist he will scope Payson while we are there so we can see what everyone is talking about. He will also be able to give us a timeline to this medical challenge being over. I hope his first estimate of next April trying to take him off the trach is realistic! Wouldn't that be great! The sedated ABR well that was a waste of time. He has moderate hearing loss in his right ear, but (there is always a catch) he did have fluid in his ear that could muffle his hearing. So, we are onto the ENT to have something done about the fluid! Such crap that they made us wait another two months for the same results. Oh well.

Despite the length of this post...it is beautiful and I am dying to get outside so I am going to end this and go hang out with my kids outside! Here is to 75 degree weather! Woohoo! Thank you Lord!